Quality of reporting health behaviors for multiple sclerosis (QuoRH‐MS): A scoping review to inform intervention planning and improve consistency of reporting

Abstract Background Multiple sclerosis (MS) is a neurological condition that necessitates a multidisciplinary approach to aid those living with MS in managing their disease. Health behavior, or lifestyle modification, is an emerging approach to MS self‐management. MS researchers utilize measurement tools to ensure that interventions are best suited to the outcomes, thereby potentially influencing practice. The aim of this study was to investigate which tools are being used for health behavior management studies in people living with MS and develop an aid for tool selection. Methods A scoping review guided by the PRISMA‐Sc checklist and the JBI manual for evidence synthesis was employed with a systematic search strategy executed across four scientific databases: Medline, PubMed, CINAHL, and Cochrane Libraries. The types of assessment tools used were extracted from the included studies. Each tool was categorized into the health behavior intervention discipline (nutrition, exercise, and psychology) and then subcategorized by the tool's purpose. The frequency of use was determined for each tool. Reporting of validation of the assessment tools were collated to inform a tool selection checklist. Results The review identified a total of 248 tools (12 nutrition, 55 exercise, and 119 psychology unique reports) from 166 studies. Seventy‐seven multidimensional tools were identified including measures of quality of life, fatigue, and functional scales. Only 88 studies (53%) referred to the validity of the tools. The most commonly reported tools were the dietary habits questionnaire (n = 4, nutrition), 6‐minute walk test (n = 17, exercise), Symbol Digits and Modalities Test, and Hospital Anxiety and Depression Scale (n = 15 each, psychology) with the Expanded Disability Status Scale reported 43 times. Conclusion Evidence from interventions may inform practice for health professionals. This review provides insights into the range of tools reported across health behavior intervention studies for MS and offers a guide toward more consistent reporting of study methods.


INTRODUCTION
Multiple sclerosis (MS) is a chronic neurodegenerative condition that is variable in its presentation, globally affecting 3.3 million people (Walton et al., 2020).Reduced conduction signaling along the nerves can cause people living with MS (plwMS) to experience a range of symptoms including disruptions to gait, balance, and coordination, increased fatigue, and spasticity (White & Dressendorfer, 2004).Disease management is focused on reducing the time to commencing disease-modifying therapies, though nonpharmacological symptom management of MS is increasingly recognized.
Lifestyle management programs for plwMS aim to assist with the self-management of activities of daily living to support behavior change while accommodating symptoms of the disease (Roessler et al., 2004).Programs recognize the unique nature of the disease course and are often tailored to needs and experiences of plwMS.
A recent meta-analysis reported that lifestyle programs often comprise multicomponent self-management approaches using multimodal methods of delivery and principles of cognitive behavioral therapy, finding that these elements improved the reported quality of life of participants (Wills & Probst, 2022).The review also reported a high level of heterogeneity in the programs.Lifestyle management programs for MS may include activities for skill development through exercise, stress management strategies, meal planning and food choice, and time management strategies or schedules (Roessler et al., 2004).
While behavior change is often considered separate from pharmaceutical therapies, many lifestyle programs do consider medication management.Disease-modifying therapies are a first-line therapy for MS and play a crucial role in disability progression and symptom management (White & Dressendorfer, 2004).Polypharmacy is commonly reported due to comorbidities, symptom management, and secondary pathologies (Frahm et al., 2020).Therefore, lifestyle management programs need to consider strategies for disease-modifying therapies as part of health behavior interventions.
Studies have demonstrated the role of exercise interventions through rehabilitation programs for plwMS to improve quality of life and enable activities of daily living (Motl et al., 2017).Planning for best-practice assessments prior to an exercise intervention is crucial to accommodate for the unique presentation of symptoms and disability, and preserving and/or increasing physical function is a known benefit of exercise for MS (Learmonth & Motl, 2016).A recent study by Marck et al. investigated the types and duration of exercise for plwMS, identifying strength and aerobic training as the most used forms of exercise intervention (Marck et al., 2022).However insufficient evidence scope and quality alongside a poor understanding of the mechanisms for MS and exercise were identified as limitations (Motl et al., 2017).Interestingly, previous studies that have investigated exercise and its effect on MS were heavily focused on quality of life rather than the types of exercise that are most beneficial (Alphonsus et al., 2019).
Nutrition behaviors are increasingly recognized for symptom management of MS (Beckett et al., 2019).While a specific diet has not been identified (Beckett et al., 2019), clinicians are encouraged to recommend a healthy and balanced diet (Bagur et al., 2017) to their clients.A recent study also suggested that while a diet should not replace pharmaceutical management, it has a compounding effect and may allow for more efficient symptom management (Stoiloudis et al., 2022).Nutrition may have a role in reducing physical disability including mobility restrictions and issues related to swallowing and has an impact on the preparation of food as well as the ability to eat food due to fatigue, cognitive decline, and/or depression.Nutrition behaviors also play a role in relation to malnutrition and nutrient imbalance leading to deficiency and increased metabolic risk.For example, elevated blood pressure and blood glucose levels, more often observed in plwMS in comparison to the general population (Esposito et al., 2018), are managed by diet.
While the prevalence of malnutrition is not known, previous studies have revealed it is more frequently identified in plwMS than in those living with other chronic conditions (Esposito et al., 2018).
A combination of exercise and nutrition behavior change strategies in parallel with disease-modifying therapy has been shown to help with the physical functioning in plwMS.However, as the disease is unpredictable, strategies to support these practices are required.Artemiadis et al. identified that while no coping strategy is more effective or of greater benefit than the other, strategies that increase an individual's perceived control can cause the least distress.Strategies may include relaxation training and cognitive behavioral therapy, including self-monitoring of stress, problem-solving, and cognitive restructuring (Reynard et al., 2014).Like exercise and nutrition, stress management aims to improve functional ability.To justify the use of stress management strategies, psychological assessments may be conducted to identify strategies with the most benefit (Groth-Marnat & Wright, 2016).
The management of MS is complex and relies on health professionals having access to evidence-based guidance to inform practice.
Therefore, the aim of this study was to collate the assessment tools used for lifestyle management studies with plwMS to inform the development of an approach to guide tool selection.

METHODS
A methodological scoping review was used to answer the question "What assessment tools are being used for lifestyle management studies for people living with multiple sclerosis?"A scoping review aims to determine the breadth of an area and is often used to identify gaps

Data extraction
Eligible records were examined with author, year of publication, country of study, study design, population characteristics (description, age, disability), sample size, and lifestyle domain addressed, and the tools used to measure each domain extracted and collated into a summary table.Where the authors mentioned validation of any of the tools used in the methods of the study, this was also collated.Each lifestyle domain was subcategorized to the discipline areas of nutrition, exercise, or psychology.Subcategories were defined by the Manual of Dietetic Practice (2019) for nutrition (Gandy, 2019), the Exercise and Sports Science Australia Guidelines (Coombes & Skinner, 2022) for exercise, and the (Groth-Marnat & Wright, 2016) for psychology (Table S2).The frequency of use of each tool was calculated based on the number of times a single tool appeared across the included studies and each of the domains of tool categorization.

Checklist development and testing
A checklist was developed from the included studies focusing on the need for validation of the tools with an MS population.Using the validity reporting from the studies, patterns in the outcomes were used to inform a flow chart and checklist that can be used to guide researchers in future planning of studies for MS.The checklist was tested for face validity using a random sample of included studies from the review.

RESULTS
The search strategy generated a total of 26,962 records.After the initial screening, 579 records were eligible and the final screening resulted in 166 studies included in the review (Figure S1).There were 14 studies for the nutrition domain, 71 that included exercise, and 103 studies that included psychology many targeting more than 1 domain.
Only four studies included all domains while 19 studies included two domains of either nutrition and exercise or exercise and psychology.
No studies explicitly targeted nutrition and psychology (Table 1).In total, 12 tools were classified as other with three related to medication, two to anthropometry, eight impact scales, four pain scales, 12 for assessing fatigue and sleep, 17 for health and quality of life, seven functional assessments, and nine acceptance and perception of disease tools.Sixty-one studies had a randomized controlled trial study design, 11 were observational studies, and 49 were cross-sectional analyses.Ref.  *Not validated with a multiple sclerosis (MS) population.

Country
For nutrition studies, only 12 tools were identified across 20 times of use in 14 studies (Table 3): Three tools were dietary assessment tools, three were screening or scoring tools, and six were biomarkers.
The most frequently used dietary tool was the modified dietary habits questionnaire (DHQ), which was used four times across all studies.A majority of the tools were clinician-reported, with 42% (n = 5) of the tools using patient-reported outcomes via self-administered measures from plwMS.
Fifty-five exercise tools were reported a total of 156 times over 71 studies (Table 2), with 4 used to assess balance, 9 to assess strength, 16 to assess mobility, 8 for endurance, 1 for both function and coordination, and 16 were general physical activity questionnaires.
The 6-minute walk test (6MWT) was the most frequently used tool, reported 17 times.One quarter (n = 14) of the tools used to assess exercise were self-administered tools and 70% (n = 39) of the tools used objective measures.
Across the six subcategories for psychology, there were 119 tools and 224 reported uses over 103 studies (Table 4).Five tools were used to assess personality, two to test intelligence, 20 behavioral assessments, five were projective, 32 for emotional intelligence tools, and 55 were neuropsychological tools.The most reported test for psychology was the Symbol Digits Modalities Test (SDMT) used 15 times.Unlike dietary and exercise interventions, self-administered and subjective tools were more common for psychological studies.Self-administered tools accounted for 62% (n = 78) of psychological tools and subjective tools accounted for 55% (n = 69).
The use of validated tools was only addressed in 88 studies (53%) included in this review (Table S3).The tool selection aid (Figure 1) was intended to be based on the studies reported in this review and best practice research methodology from published reporting guides.A search of the EQUATOR network (https://www.equator-network.org)was undertaken to identify suitable reporting checklists/aids with no tools available for quality improvement studies related to behavioral medicine, neurology, nutrition and dietetics, physiotherapy, or psychology.This same pattern was identified when limiting the search to reliability and agreement studies for each of the disciplines.When limited to reporting guidelines, only two were obtained in relation to neurology though neither was related to multiple sclerosis or its related disease classifications.The tool highlights a need for validation of all measures used in a study with respect to the population being targeted.In many instances, this is also in parallel with a need to consider quality assurance measures within the study and the need for references to validation studies to support statements made by the authors.
The authors of this review also note a need for researchers to consider the difference between validity and reliability as some included studies of this review seemingly used the terms interchangeably.

DISCUSSION
The aim of this review was to identify the tools reported by researchers when implementing lifestyle interventions or health behavior studies for the management of MS.The outcomes of this review can inform health professionals about evidence-based tools that may be used in practice, with the developed selection aid used to assist in choosing commonly known tool types.The results of this review indicated a wide variety of tools that can be used for lifestyle interventions for MS; however, it also highlights a collection of tools that are versatile as they are used across studies regardless of the intervention.
Exercise and psychology domains appeared to have a wide scope of investigation through the included studies, while nutrition appears to be less extensively studied with only 12% of the studies in this review focusing on nutrition interventions.This could be due to the emerging nature of nutrition and its role within MS management and an apparent focus on studies for the risk of MS rather than its management (Probst et al., 2022).
Exercise-based interventions from this review indicate that general physical activity questionnaires and mobility assessments are the most varied yet frequently used forms of tools(n = 16 each).While questionnaires are useful, they often only assess activity levels to identify trends or are used in the evaluation of an intervention (van Poppel et al., 2010) and, therefore, are not an indicator of ability or capacity.
However, mobility assessments were a common physical assessment administered by clinicians.This finding supports the priority of gait as a common concern among plwMS (Bethoux & Bennett, 2011).
For nutrition interventions, this review found that biomarkers were the most frequently used tool (n = 6).Biomarkers are indicative of intake and metabolism.They are recommended throughout the literature as they limit the errors that may occur when assessing intake, particularly for methods that rely on recall (Naska et al., 2017).Memory and cognitive impairments are common concerns for plwMS (Das Nair et al., 2016), and asking for a recall of information may be challenging or be restricted to the ability of a health practitioner to aid the recall using cognitive assistance such as prompts.Being able to accurately measure the food intake is important to reduce the risk of symptom-related malnutrition or deficiency, though concerningly, we only identified three dietary assessments used in the included studies.
The results from this review indicate that psychological interventions mostly use neuropsychological tools.These tools assess broad areas of cognitive function and are commonly used with participants who have a health condition that affects the brain (Harvey, 2012).
While the psychological implications including cognitive dysfunction are known for MS (Benedict et al., 2017), the application of cognitive tests like the SDMT is not consistent.Having a better understanding of the tools that can be used to assess cognition for MS will allow for a more accurate representation of the challenges plwMS may be experiencing.
A key finding outside of the number of tools used was the high

CONCLUSION
Evidence-based practice for health is informed by research interventions and reviews.Evidence-based practice allows health practitioners to improve the care offered to their clients to ensure that they are receiving best-practice care to support behavior change and disease management (Asadoorian et al., 2010).This scoping review has given insight into the variability of tools used across the lifestyle interventions of nutrition, exercise, and psychology as well as additional tools that are considered to be multimodal.
Greater consistency is needed for researchers to determine bestpractice tools within the disciplines of behavior change for MS so that health practitioners can use the evidence to advance their practice.

AUTHOR CONTRIBUTIONS
Abbreviations: CIS20r, Checklist Individual Strength; DASS-21, Depression Anxiety and Stress Scale-21; DMT, disease-modifying therapy; FSS, Fatigue Severity Scale; GHQ-12, General Health Questionnaire 12- Abbreviations: BDI-2, Beck Depression Inventory-II; BDI-FS, Beck Depression Inventory-Fast Screen; BRBN, brief repeatable battery of neuropsychological tests; DASS-21, Depression Anxiety and Stress Scale- Checklist for multiple sclerosis (MS) lifestyle tool selection.their practice.Having an understanding of which version is the most updated also ensures that researchers are informed during their study planning.The tool selection aid that was informed by the included studies of this review will enable researchers to consider the implications of the study population characteristics, the context of the study, the expertise of the research team as well as the scientific rigor of the tools used to measure the outcomes.The tool considers the subdomains of nutrition, exercise, and psychology in planning for an intervention study and can be used in conjunction with the review findings reported in Tables 2-4 to reduce the variability of the tool types used and improve the consistency and comparability of study outcomes for MS.A strength of this review was that this is the first attempt at summarizing assessment tools used for MS lifestyle interventions to guide researchers who are establishing themselves in this field of research.The review process followed best practices including multiple reviewers to ensure an accurate representation of the current evidence.The search strategy underwent various rounds of feasibility testing to ensure that the records retrieved were as extensive as possible.The members of the research team have discipline expertise across the investigated lifestyle areas (exercise and nutrition); however, the team did not include a member with psychology expertise.Therefore, the categorization of psychological tools relied on an investigation of the domain the tool assessed and definitions outlined in the Handbook of Psychological Assessment(Groth-Marnat & Wright, 2016).

Table 2
, Checklist Individual Strength; DASS-21, Depression Anxiety and Stress Scale-21; DMT, disease-modifying therapy; FSS, Fatigue Severity Scale; GHQ-12, General Health Questionnaire 12item; HADS, Hospital Anxiety and Depression Scale; McD, McDonald criteria for MS; MFIS, Modified Fatigue Impact Scale; MMSE, Mini-Mental State Examination; MS, multiple sclerosis; NA, not applicable; PPMS, primary progressive MS; RCT, randomized controlled trial; RRMS, relapsing-remitting MS; SPMS, secondary progressive MS; T25FW, timed 25-foot walk; TICS-m, modified telephone interview for cognitive status.Ten most frequently used tools for nutrition studies a , classified into subcategories of tool type.Ten most frequently used tools for exercise studies a , classified into subcategories of tool type.Number of times the tool was used across the 166 studies included in the review.
EDSS, Expanded Disability Status Scale; FFQ, Food Frequency Questionnaire; Hs-CRP, high-sensitivity C-reactive protein; TSH, thyroid stimulating hormone.aNumber of times the tool was used across the 166 studies included in the review.*Notvalidated with a multiple sclerosis (MS) population.TA B L E 3 a Beck Depression Inventory-II; BDI-FS, Beck Depression Inventory-Fast Screen; BRBN, brief repeatable battery of neuropsychological tests; DASS-21, Depression Anxiety and Stress Scale-21; HADS, Hospital Anxiety and Depression Scale; MMSE, Mini-Mental State Examination; PASAT, paced auditory serial addition test; SDMT, Symbol Digits Modalities Test; STAI, State Trait Anxiety Inventory.
a Number of times the tool was used across the 166 studies included in the review.a Where discipline experƟse is outside of named disciplines, consider stage 2 of flow diagram only b Consider in relaƟon to planned study design